Lila C. Whitaker

Lila Claire Whitaker, trisomy rule breaker, superstar, and spicy veggie, 10.5, was born September 12, 2012, to Kayse Gale and Sean Whitaker at Ascension Borgess Hospital, in Kalamazoo, MI. Lila was their first great adventure. Weighing in at only 4 pounds 7 ounces, Lila was tiny but mighty. Shortly after birth, Lila was diagnosed with Edward’s Syndrome, or Trisomy 18. Lila didn’t seem to be too bothered by her terminal genetic disorder. As a matter of fact, Lila seemed to make it a point to do all of the things that doctors said she would never do, starting with living. She was initially given a prognosis of two weeks. Thanks to a supportive team at CS Mott Children’s Hospital, Lila had open heart surgery early on and not only survived but thrived. Despite being told early on that Lila would “be a vegetable” and “would never form relationships,” Lila was surprisingly spicy. She attended school at WoodsEdge Learning Center, where she dazzled everyone, she met with her giant, infectious, smile. It was there that everyone realized that she loved holding hands with boys, flirting with the male staff, and wrapping everyone around her tiny fingers. She loved going on field trips with her friends, and swimming in the heated pool. One of her biggest accomplishments while attending was learning to walk in her walker. She very much enjoyed running over any toes that got in her way. Lila loved being a big sister to her two crazy brothers. Just like any older sibling, she thought it was funny to be as annoying as possible, when she could. She also thought it was funny when they would get scolded. She could listen for hours as Wills read her stories. There wasn’t a day that went by that you wouldn’t catch her holding Holdens hand in the car. Lila was a huge force in the greater rare trisomy community. It’s hard to put into words the impact this tiny child had on the medical community. Lila participated in multiple medical studies. She was one of the faces of Trisomy 18. She helped her mom advocate for countless children with rare trisomies, not just in Michigan, but around the world. Lila had very special friends as far away as Scotland, Australia, Canada, Mexico, and England. She loved traveling and attending conferences hosted for families of children who have rare trisomies, and enjoyed making friends with many children just like her. Lila returned to the stars on May 30, 2023, surrounded by love and light, at Bronson Children’s Hospital, Kalamazoo, MI. After her death, Lila was the first person in Michigan with trisomy 18, to donate their organs to a living person. Lila is survived by her parents, Kayse Gale (Anthony Snyder), Sean Whitaker (Whitney Ehresman), adoring brothers, William Whitaker, Holden Whitaker, and Royce Krinker. Aunts/Uncles, Ashley Whitaker (Jesse Goorhouse), Aurora Winters (Bill Winters). Allyson Ferber (Tony Mussio), David (Melissa) Ferber, Amanda Vandusen, Brandi Ehresman (Bill Cronkright) Grandparents, Ian and Robin Whitaker, Cindi Patrick, Brodie and Kymberli Ehresmen, Dave and Denise Ferber. Cousins, Bryton, Mylo, Kéyon, Quentin, Viviana, Violet, Stevie, and Remy. The family would like to send a special thank you to the team at Bronson Children’s Hospital, PICU, for making Lila’s last days as comfortable as possible, and the Michigan Gift of Life crew. If you are not an organ donor, please consider registering.